The Strangeness of Psychomotor Epilepsy

I watched the happy, fulfilled customers sitting at the other tables in the restaurant. How could they appear so perfectly adjusted and calm while an atom bomb was exploding in my head?

Some time ago, for around three years, I experienced shattering spells. Each one lasted maybe one or two minutes. These deluges of pure fear, which sometimes occurred several times a day, didn’t cause physical pain, but emotional upheaval and confusion. Afterward, I had trouble breathing. I felt dizzy, my heart pounded, and I wanted to run out of the room. The spells could happen anywhere, but were most predictable in restaurants. I forced myself to act as though nothing was happening and didn’t tell anyone.

During the same years, I experienced periods of torturing anxiety that were probably related to the spells. At worst, I couldn’t sit down to wait for a prescription to be filled or to the Thanksgiving dinner I had prepared. I was coming out of my skin. I was so freaked out I didn’t want to chance reliving the spells by describing them to anyone. Keeping them a secret also made it easier to hope they would go away on their own. I felt ashamed to have been “chosen” to be attacked; experiencing something scary I’d never heard of was isolating.

Fearing this was some kind of punishment for being me, I went to see a psychologist for help. It took 18 months for her to convince me to see a neurologist. When I finally did, the doctor ordered an EEG (electroencephalogram) and other tests to check out my brain. Having a treatable neurological problem was now my only hope for relief; if the tests came out normal, where would I turn?

In the elevator, after finding out the results and leaving my neurologist’s office, I clicked my heels together for joy. The EEG showed I had psychomotor epilepsy, sometimes called temporal lobe epilepsy for where it is located in the brain. You might think I’d be upset with the diagnosis of epilepsy, but it was a relief because now something could be done about it. The doctor prescribed anticonvulsant medicine. It took awhile to adjust the medication and to get over my fear of restaurants, but the spells stopped, crippling anxiety ended, and calmness returned.

These spells are different from the grand mal seizures we usually associate with the word epilepsy. I learned that psychomotor epilepsy is a condition where people experience sights, sounds, sensations, smells, and tastes which are not there. They often feel detached from their surroundings and afraid, and after a spell they may be confused. Some behave in odd ways during an episode, such as making automatic movements. With me, however, there were no outward signs.

A few months ago, after more than 30 years, I slowly went off the medicine with no ill affects.

I’m not comfortable talking about my experience with psychomotor epilepsy. I felt so tortured by the spells, however, that I feared I’d end up killing myself unless I found a solution. This is why I want therapists and others to be aware of it. When I hear of accounts of suicides that leave the survivors completely surprised, I’m reminded of how lucky I was to get help. Some of these may have resulted from the desire to end the anxiety, confusion, and misery psychomotor epilepsy can produce.

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Hi! For most of my life I have had trouble with seizures. I was put on medication, stayed away from strobe lights, the usual. We discovered my triggers were usually stress, blood, pain, needles, things of that nature. I began seeing a psychologist for anxiety. She has taught me many tools and I do practice them! However, no matter how hard I try to breathe or "think happy thoughts" the seizure always seems to win! I get a strange sense as if I am under water, like when you get water up your nose and it kind of stings a bit? I also get a blur of colors and then next thing I know everyone is yelling my name and I can't stop crying, or shaking my head back and forth. I have almost been told I make noises with my mouth, and sometimes cough as if I am going to be sick. I cannot speak, sometimes I can barely open my eyes. It is as if all my senses are heightened. The light is unbearably bright, everything is louder, I can feel the blood traveling through my vains! (so it seems) I have experienced numb limbs, confusion, tingly all over, shaky, tired AT FIRST, but then it is as if I bounce back just like that. Typically after seizures a person can sleep for an extended period of time. Your story describes me almost to a T except I often have, what people think are, grand mal seizures. They are getting very frustrating and nothing seems to work. I have printed your story as well as other links referring to this to show my counselor and doctor. Are there any types of medications out there to specifically help this kind of seizure? Like I said, I have had this for most of my life and doctors have actually seen me have them and agree they are probably stress related but I have never been told about psychomotor epilepsy or any type of treatment for it! I am thrilled to realize I am not alone! Any tips to help get this under control?

me again, I forgot to mention on an EEG exam I took they saw the seizure activity in the front left temporal lobe of my brain. (bit of a tongue twister there, hope I said that right!) I also have a speech impediment that speech therapy could not completely fix, I have always wondered, could these be related?

Dear Anonymous, I'm answering this and your other comment. I wonder if you could see a better neurologist for your seizures. I'm not a doctor, but it sounds to me like you have temporal lobe and grand mal seizures. I took tegretol, topamax, and dilantin for my t.l. epilepsy and combinations of them worked very well. There are other medicines available too, all prescriptions I'm sure. My doctor said I probably had a kind of wrinkle in my temporal lobe, and sometimes I stutter also. I have a feeling it's related. I wish you the best and hope you get treatment. Elizabeth

I read with interest your story of being a psychomotor epileptic. My brother, our cousin, my mother and me were on the other side of the equation. My father and his identical twin were born with psychomotor epilepsy. My parents were married in 1952. For the first 16 years of their marriage (and the first 12 years of my life)there was no explanation for his flipping out (the term my mother gave it) into bouts of violence. It was not until my father wound up as a patient at the University of Washington Medical School (1968) that the term psychomotor epilepsy was attributed to dad and his late brother (in a fit of psychomtor rage, my uncle killed his wife in Nov. of 1959...6 weeks later (in the depression that came afterward) my uncle took his own life). My now late father (who died of old age in 1998) and his brother sadly lived in a time when drugs for this disorder in the temporal lobe just did not exist. It is, indeed, a strange medical issue. We survived my father's violent outbursts only because my mother (a lawyer) learned how to outwit his alter-ego. She stayed with him because she knew that it was not his fault.

Thank you for writing about this. If only more people were open about it, those who have it and their loved ones might tell a different story. The story in my family about my uncle was that he had been hit by a car. It sounds like your father's and uncle's doctors didn't know to check for epilepsy and might have prevented a murder, a suicide and your family's difficulties living with your father. I hope all is well now with your family.

Apparently my father and uncle were having all sorts of seizures and violence when they were little boys. Sadly, their father (the smart parent) died under mysterious circumstances when the twins were 10 years old. Their mother only had a 6th grade education and was not too bright. When my older brother had been an infant my dad had been feeding him when dad had a Grand Mal seizure. It was then that my mother (an attorney) realized her husband had epilepsy...but not the psychomotor epilepsy. That diagnoses was still 14 years into the future. My uncle was very bright. An engineer for Boeing Aircraft and a designer of racing sailboats.

Wow, your family has really had a hard time with epilepsy. My uncle may have had both Grand Mal and psychomotor seizures. My son did too.
I was lucky to only have the pm kind. How scary to not know when you're going to lose all control of your body. Thanks for writing. Elizabeth

my eegs have shown nothing but I have only had one 6 yrs ago. No one outside of my immediately family believes me. They all think I am faking because the symptoms are not so very physically obvious. It makes it worse because there is no one to rely on for help

Hi and thank you for your story.
I recently went into the ER and got an MRI for what I was calling simple partial seizures.. I've been dealing with auditory hallucinations and feelings of deja vu for probably three days in a row every three months for the last three or four years and last week I had seven days in a row (about 8 episodes a day whereas they are usually far less that than). The doctor made me feel like an insane person and while family and friends have been supportive I really do sound crazy when I try to explain it, it's like nothing else you can relate to. I was scheduled to have an EEG two days after the MRI but I postponed it because the seizures stopped the day after the MRI and they wanted me to hopefully have an episode during the EEG... so my question for you is did you have an episode when you took the EEG or where you experiencing the episodes on a more regular basis than I?

Dear Katy, Thank you so much for your reply. I know what you mean about the crazy part. I was afraid to mention what was happening to me to anybody. I really don't know if I had an episode during the EEG. I thought they could tell I HAD had them by looking at the results. Sometimes the episodes were frequent - many a day. Other times they were just one or two a day. Did you go to a neurologist? I think most neurologists will be familiar with different kinds of epilepsy. They gave me a special EEG with electrodes up my nose to get readings close to my brain.
Hope this helps and good luck! - Elizabeth